PD for year

[Foncie]

I’ve been diagnosed with PD for a little over a year. Started on Sinimet and couldn’t take. Neurologist started me on Neupro Patch. My worst symptoms are Slow movents and tremors. No resting tremors. Does CBD oil help with these symptoms?

[JAS9]

I, too, couldn't tolerate Sinemet, but found that I could tolerate Rytary, which is a good extended release LD/CD drug. I recommend that you ask your neurologist for some samples. It can be expensive but there are ways around that.

[Foncie in reply to JAS9]

Thank you

[ElliotGreen in reply to JAS9]

Could I ask what your symptoms of Sinemet were that you couldn't tolerate?

[Foncie in reply to ElliotGreen]

15lb weight loss and severe tremors of feet and legs. Took video to neurologist and d/c immediately. Started me on neupro patch.

[JAS9]

"... an alternative cure on the disease."

I respect your opinion and what you do; it might be helpful for some to reduce symptoms. However, please don't give false hope by using the word "cure". Alternative or not, there is - so far - no cure. At least none that can be proven or is consistently repeatable.

[Hidden]

Were you diagnosed by a movement disorder specialist? The tremors you mention are not likely to be related to PD as they appear to be essential tremors not resting tremors.

[Foncie in reply to Hidden]

Yes, by Movement Disorder. I’ve been told by Neurologist that he’s not sure I have PD..lost, smell, tremors ( not resting) , slow movements and don’t swing arms.

[Hidden in reply to Foncie]

I hope that you get confirmation one way or another.

[Foncie in reply to Hidden]

Thank you, me too!

[jimcaster in reply to Foncie]

I'm just curious to know if you also have micrographia. I have micrographia and poor sense of smell, but no resting tremor. I was diagnosed last May and whether it's due to exercise, B1, fasting, or blind luck, my symptoms remain very mild. Micrographia is the only thing which bothers me and I'm curious if you have it, too...

[Hidden in reply to jimcaster]

Jim,

I notice that some people get help for their micrographia and sense of smell from B-1, but I also notice that some people get those benefits from mannitol. Have you tried mannitol?

Art

[Foncie in reply to Hidden]

What is Manitol for?

[Hidden in reply to Foncie]

Foncie,

'What is mannitol?'

That is a big question and there are literally hundreds of posts on this forum that delve into that subject and you can search it by using the search box at the top right of the page.

Mannitol is a polyol or sugar alcohol somewhat similar to the sugar substitutes Xylitol, ertythritol and sorbitol. It is thought to not only cross the blood brain barrier, but to also temporarily disrupt it. It is believed That mannitol can have an effect on alpha synuclein that can possibly be helpful for PWPs and possibly other neurodegenarative diseases. Mannitol also works as a prebiotic and as such is digested through the fermentation process in the intestines which probably accounts for its known ability to generate plenty of gas in humans at the dosage used for PD. It is reported to improve some symptoms in some PWPs and just like every treatment modality for PD, seems to work for some and not for others. For those who it does help, they are happy to take it. It seems to have benefits that are simlar to B-1, but from what I have seen, not as many and not as often as B-1/HDT.

In terms of safety, mannitol has been used as a sugar substitute for some time (many years) and so far seems to have a good safety profile with the main detraction seeming to be the excess gas that it is often reported. One company developed a product called Syncolein that contains a standard dose of mannitol with the addition of alpha galactosidase (AG), the active component in the anti gas product called "Beano". The addition of AG to the mannitol is supposed to significantly reduce the excess gas caused by the mannitol, but that benefit comes at a cost premium for the Syncolein product. In any case, it seems that like B-1, the easiest way to find out if you will benefit from taking mannitol is to try it and see if you think it is worth it. Some say yes, some say no. In any case, it seems like a fairly safe product to test.

People report adding mannitol to their coffee or I imagine possibly tea. One thing that can be tried to lessen the gas effect is to mix your full daily dose of mannitol in a bottle of water and sip throughout the day to act as a time release dispersion so you do not get a massive amount of mannitol all at once as well as the gas that can come with such a single large dose.

This is enough information to give you an idea and if the idea interests you then you can search more and others here will certainly have recommendations for you regarding mannitol.

Art

[jimcaster in reply to Hidden]

I tried mannitol, but just for a week or so. I know there's a variation to reduce gas, but the kind I took did not have that feature. I may try again. Maybe I'm misinterpreting the ClinicCrowd results and I know there were technical glitches which led people to opt out, but I'm also inclined to believe people dropped out in huge margins because it simply did not work. If I had participated and had good results, I would have completed the study despite the technical issues. Thus, I'm skeptical. On the other hand, there's little downside other than excess gas.

[Foncie in reply to jimcaster]

Yes, I do have Micrographia- symptoms have just started badly for me. I plan to start the Thiamine hcl in the next week or two. I just started CBD oil today.

[Hidden in reply to Foncie]

Okay, but you might not want to start too many things at the same time because if you do, how will you know what is doing what. To give you an example of what I am saying, lets say that you start thiamine and start seeing benefits in the first month or two. You're feeling better and a bit more positive then you start to think, I think I'll try mannitol since others have reported benefits from it, so two months into HDT, you add in mannitol. Two weeks after starting mannitol, you notice that you can now smell things again after not being able to smell things for years. This positive effect has been reported for mannitol or B-1, but in your case which is it? With HDT, people have reported accruing benefits beyond a year and sometimes people have reported no benefit from HDT for months and then all of a sudden one day, benefits start to appear while others have reported benefit from b-1 just moments after their first dose, but even in those cases benefits do not come all at once. Some people report no benefit for tremor reduction for months with B-1 and then all of a sudden that benefit starts to manifest.

The point is that if you want to know what is causing what benefit, you will have to plan out each new supplement or medication that you want to add to your regimen to give you a better idea on that point. Not much point in taking a supplement that may or may not be offering you any benefit. The good thing with mannitol or HDT is that if you ever want to be sure about what it is or isn't doing for you, all you have to do is stop taking either one and you will know exactly what it was or wasn't doing for you in short order (2 months or less) and if you discover that it was doing something meaningful for you, all you have to do is start it up again at the effective dose you were previously using and all will be good!

Art

[Jenzo]

CBD yes and no. I take a very low dose sinamet half the lowest dose 3 times a day. I needed the CBD to have some (very low not intoxicating) THC or it gave me weird pressure headaches but it did calm the tremor and helps a lot with sleep.

[Foncie]

Thank you

[Despe]

May I ask how much you charge? Thank you.

[Despe]

You still didn't reply to my question.

[Foncie in reply to Despe]

What’s your question???

[JohnPepper]

Have you asked your neurologist to put you onto an MAOb inhibitor? That is the only type of drug that can help slow down the progression of Pd. I was on Selegiline for 8 years, during which I also did fast walking. Then I was able to come off the Pd medication and have been off it ever since. I still do the fast walking and at 84 I can still walk 7 kilometres in an hour.

Look a my website - reverseparkinsons.net and contact me. I will help you possibly do the same, at no cost to yourself.

[Foncie]

Neurologist has me on Prozac.